Sound Pharmaceuticals (SPI-5557 & SPI-1005)

[Scruffiey]

I feel that the fact that tinnitus has been reversed in mice means it could potentially be reversed in humans. While that doesn't necessarily mean Ebselen will have the same effect in people, it's still a significant development.

Anecdotal, of course, but I came across someone on Reddit who claimed to have participated in the Ménière's trial. While they were pleased with the reduction in vertigo, they unfortunately said it had done nothing for their tinnitus. So, for now, this is just a small step forward.



I have my suspicions that this drug might be useful to some degree for some of us, as it clearly reaches the right areas. I'm really, really hoping it helps with TTTS, hyperacusis, and noxacusis—maybe even with reducing early-onset tinnitus levels or something similar.

I believe tinnitus will be treatable, if not curable, within the next 15 years. And yes, Ebselen may be the starting gun. If they could develop the equivalent of paracetamol for a bad headache—something that could smooth out the pitch and level on difficult days—that would be incredible. The mental health benefits and overall improvement in quality of life, just from knowing there was even the slightest safety net, would be unprecedented.

 

[LovableGamer]

Can anyone tell me the current status of SPI-5557? This is for hearing loss, right? Is SPI-1005 also for hearing loss, or is it for something else?

I have hearing loss, and with all the different research happening, it gives me hope that one day I might be able to hear like a normal person. If that happens, maybe my tinnitus will decrease or even stop altogether since the nerves would be functioning properly.

 

[Scruffiey]

I found another Reddit post from someone in the trials (it seems there was no NDA). They felt there was some benefit to their tinnitus levels throughout the day while taking it, unlike the person I mentioned earlier. For what it's worth, their experience seemed more positive.

Can anyone tell me the current status of SPI-5557? This is for hearing loss, right? Is SPI-1005 also for hearing loss, or is it for something else?

I have hearing loss, and with all the different research happening, it gives me hope that one day I might be able to hear like a normal person. If that happens, maybe my tinnitus will decrease or even stop altogether since the nerves would be functioning properly.

SPI-1005 is currently indicated only for Meniere's disease to reduce vertigo attacks, slow hearing loss, and reduce tinnitus. There is some hope that it might have benefits off-label or after further investigation, but there are no guarantees.

You've mentioned Turner syndrome in your other posts. SPI-1005 almost certainly won't reverse any hearing loss you've already experienced, but there is a chance it might help prevent further progression depending on the underlying pathology. It is also being tested for the prevention of acute noise-induced hearing loss, and since it works for Meniere's disease as well, that suggests a possible protective effect.

As for SPI-5557, there has been no public progress as far as I'm aware. I believe the focus has been on bringing SPI-1005 to market.

I do think advancements will continue, and your hearing may eventually be restorable, but it could be a while before such treatments become available—likely not until 2035 or later. Hopefully, at least a tinnitus treatment will arrive much sooner.

 

[LovableGamer]

I found another Reddit post from someone in the trials (it seems there was no NDA). They felt there was some benefit to their tinnitus levels throughout the day while taking it, unlike the person I mentioned earlier. For what it's worth, their experience seemed more positive.

SPI-1005 is currently indicated only for Meniere's disease to reduce vertigo attacks, slow hearing loss, and reduce tinnitus. There is some hope that it might have benefits off-label or after further investigation, but there are no guarantees.

You've mentioned Turner syndrome in your other posts. SPI-1005 almost certainly won't reverse any hearing loss you've already experienced, but there is a chance it might help prevent further progression depending on the underlying pathology. It is also being tested for the prevention of acute noise-induced hearing loss, and since it works for Meniere's disease as well, that suggests a possible protective effect.

As for SPI-5557, there has been no public progress as far as I'm aware. I believe the focus has been on bringing SPI-1005 to market.

I do think advancements will continue, and your hearing may eventually be restorable, but it could be a while before such treatments become available—likely not until 2035 or later. Hopefully, at least a tinnitus treatment will arrive much sooner.

Thank you! It would definitely be great if it could at least help protect my hearing from getting worse.

 

[Fightthearmy]

I believe tinnitus will be treatable, if not curable, within the next 15 years. And yes, Ebselen may be the starting gun. If they could develop the equivalent of paracetamol for a bad headache—something that could smooth out the pitch and level on difficult days—that would be incredible. The mental health benefits and overall improvement in quality of life, just from knowing there was even the slightest safety net, would be unprecedented.

Could, would, may, hoping that… Looking at where my career and life will be in 15 years.

 

[Scruffiey]

Could, would, may, hoping that… Looking at where my career and life will be in 15 years.

I don't like it either. I wanted a cure yesterday. But I'm being realistic based on the current state of research, the time it takes to develop treatments, run trials, and bring them to market.

Personally, I plan to enter as many clinical trials as possible if I think they have a chance of helping, because I'd love to regain some semblance of my old life much sooner than 15 years from now.

Until then, despite the horrible days when I come here to vent, commiserate, and feel scared, I'll have to do my best to accept my situation and make the most of it—while hoping I don't get worse.

Then again, a huge breakthrough could happen tomorrow. Nothing in life is certain. Whatever happens, happens.

 

[Fightthearmy]

I don't like it either. I wanted a cure yesterday. But I'm being realistic based on the current state of research, the time it takes to develop treatments, run trials, and bring them to market.

Personally, I plan to enter as many clinical trials as possible if I think they have a chance of helping, because I'd love to regain some semblance of my old life much sooner than 15 years from now.

Until then, despite the horrible days when I come here to vent, commiserate, and feel scared, I'll have to do my best to accept my situation and make the most of it—while hoping I don't get worse.

Then again, a huge breakthrough could happen tomorrow. Nothing in life is certain. Whatever happens, happens.

I appreciate the effort you've put into researching this drug. However, I regret getting involved with a prediction that spans such a long timescale. Maybe I just don't see the connection to the topic. After personal setbacks—such as not completing my education when I was younger—it's clear that I will face significant disadvantages in pursuing the career I always wanted and achieving financial stability.

 

[Scruffiey]

I appreciate the effort you've put into researching this drug. However, I regret getting involved with a prediction that spans such a long timescale. Maybe I just don't see the connection to the topic. After personal setbacks—such as not completing my education when I was younger—it's clear that I will face significant disadvantages in pursuing the career I always wanted and achieving financial stability.

Hey,

I have had massive personal setbacks. At this point, I am in my mid-30s and have already lost half of my life to issues beyond my control. I was literally at the finish line, ready to start the new life I had dreamed of for ten years. It was finally going to be my time—then this ugly disease knocked me back down to a place even worse than before.

Money? Well, I had hoped to finally find someone to share my life with, but at this point, I would settle for a single friend nearby to meet up with. We have all lost something to this, and we need to try to appreciate what we do have.

Besides, there are other avenues for education and financial stability that can be pursued from home. It may not be what you had planned, but life does not always go the way we expect. Sometimes, in adversity, we find unexpected good things. I hope that happens for both of us.

As for this drug—do not give up on it completely. It may still have some benefits. With its potential protective effect, maybe it could make a trip to a noisier place feel like less of a risk for us. That would be a start.

 

[Ricardo AM]

Has anyone here on the forum watched any of the presentations?

I can't find anything other than what is available on their website.

News - Sound Pharmaceuticals

soundpharma.com

 

[Joey72]

I appreciate the effort you've put into researching this drug. However, I regret getting involved with a prediction that spans such a long timescale. Maybe I just don't see the connection to the topic. After personal setbacks—such as not completing my education when I was younger—it's clear that I will face significant disadvantages in pursuing the career I always wanted and achieving financial stability.

Never give up.

I was born prematurely and never had a father. My mom raised me, and we were dirt poor. I was kicked out of high school, then drafted and sent to Vietnam, where I saw combat. After I got out, I became an alcoholic. But something changed—someone at the unemployment office helped me get into a job training program. I completed it, sobered up, and eventually built a good career in county government. That allowed me to buy a modest home and raise a family.

Later, I retired, got divorced, and ended up homeless, living in my car. But I clawed my way back up by taking labor jobs. At 68 years old, I am stable again. I have a nice home, and except for tinnitus and some arthritis, I am living well.

Have faith. You will succeed.

 

[Fightthearmy]

Never give up.

I was born prematurely and never had a father. My mom raised me, and we were dirt poor. I was kicked out of high school, then drafted and sent to Vietnam, where I saw combat. After I got out, I became an alcoholic. But something changed—someone at the unemployment office helped me get into a job training program. I completed it, sobered up, and eventually built a good career in county government. That allowed me to buy a modest home and raise a family.

Later, I retired, got divorced, and ended up homeless, living in my car. But I clawed my way back up by taking labor jobs. At 68 years old, I am stable again. I have a nice home, and except for tinnitus and some arthritis, I am living well.

Have faith. You will succeed.

I was skeptical of the idea that a treatment could return you to the way you were before developing tinnitus. If you are satisfied with your job history and have other things in life that matter more, then maybe it could feel that way for you. But for anyone in my situation, only in the movies, my friend.

I am literally going to have to aim lower, much lower. I will probably be twice the age of everyone else by the time I finish my studies, with a gap in my résumé because I could not work full weeks.

A treatment option that becomes available after 10 or 15 years is, to me, about as valuable as no treatment at all. It makes no sense that I cannot access Retigabine or receive the kind of treatment Dr. Pulec's patients once did.

 

[Rings-a-Bell]

I have noise-induced hearing loss at 4 kHz and tinnitus at that same pitch. However, there is definitely an inflammatory component, because when I was taking very high doses of Prednisone (80 mg per day), my tinnitus almost completely disappeared. I remember being outside at night in a quiet place and not being able to detect the tinnitus at all, something I have not experienced at any other time since my onset seven years ago.

That said, you cannot stay on doses that high for more than a day or two, and smaller doses, even 60 mg, did not have the same effect. Still, if there is a new drug that specifically targets inflammation in the ear, it gives me hope that it could actually help.